Story about hospice in Antigua,

I went to medical school down in the Caribbean at an island called Antigua. I had the opportunity to
volunteer for a few months at one of the only hospice care facilities there. I remember driving there for
the first time, and its at the end of this abandoned hospital. Which is decaying and deteriorating, like
straight out of a scary movie. But at the end of this old hospital is a separate long building. There’s only
about 20-25 residents that stay there at a time, and one of them was Mr. Eugene. He was this tall
gentleman with a bald head and had glasses with the strings around the ends. He would always talk to
me about history and his travels to and from Jamaica. One day, he asks me if I could sneak him a
cigarette because none of the other nurses would agree. I remember just laughing it off but he was very
adamant about it. So I told him i’ll try to see what I can do. I went to Jane, she was the main hospice
administrator and I spoke to her about Mr. Eugene’s wishes. To my surprise she said, if you’re willing to
why not…but keep it as a secret. A few days later, I role him out in the garden, in this hidden nook. And
I hand him the cigarette and a lighter. For the next 5mins he sat there smoked and just stared straight
ahead. In that moment, you realize that this wasn’t some act of self-destructiveness but rather the need
to feel his lungs being full before he no longer can. It’s at moments like those where you realize that
there is a real disconnect between medicine and the process of dying. Hospitals are not designed as a
place for people go to pass away, its strictly for acute illnesses. That is why the role of a family physician
in end of life care is so crucial and important.

To begin, I have a few questions for all of us to think about

1. What prompts you to start the discussion about end of life care
2. How do you redirect a patient’s focus from cure to a more reasonable goal
3. What are different types of advanced directives and the goal of a MOLST form
4. What are some guidelines for medical management of common symptoms seen at the end of
life.

A 57-year-old female schoolteacher recently received a screening colonoscopy. During the procedure, a
2-cm × 2-cm sigmoid mass was biopsied. After further workup, the patient was diagnosed with stage III,
two–node-positive colon cancer. Her oncologist discussed the prognosis with her and recommended
adjuvant chemotherapy. The patient is still confused about what to do. Distraught, she calls her primary
care physician and asks, “What should I do? Will I die soon?”

This is an example of when the patient prompts the discussion about a terminal diagnosis.

In this setting communicating the bad news requires having thorough knowledge of the illness and
knowing the patient’s preferences.

Another measure as to when to start the discussion about end of life care is predicting life expectancy.
It’s often found that due to our relationships with the patient we tend to over estimate the patient’s
remaining years.
Another reliable tool to assess patients with functional decline is the Palliative Performance scale. This
scale is widely accepted by the National Hospice and Palliative Care organization along with the
American Academy of Hospice and Palliative Medicine.

And also trust your own judgement, would you be surprised if your patient passed away in the next six
months? If the answer is NO, then it is time to have the conversation.

Communicating the Bad News

Practice and Prepare:

- Have a few Key points that the patient should retain

- Know what decisions need to be made at the end of the conversation
- Determine the setting of meeting and simple things like make sure your cellphone/pager is off.

Assess Patient’s understanding and preferences

- Do they want a detailed account of their disease process vs do they want the general picture.
- How much do they know about their condition already?
- How do they feel about what they know?

While presenting the information

- Use Easy to understand language, short sentences and avoid medical jargon
- Use the Ask – Tell – Ask technique. Start by asking the patient what they know, proceed with
giving them short amount of information and ask them to repeat it back to you.
- It even helps to write down some of the important information

Discuss future options

- Provide the patient with adequate referrals to specialists

- Plan for follow up visits and help patient understand recommendations from other specialities

Provide emotional support

- Use Verbal and Non-verbal cues

- Allow the patient to express their emotions
- Provide additional information on support services: social workers, chaplains, psychologists

Predicting Life expectancy

- There are many Formulas and equations for many diseases that give you an accurate mortality
rate.
- There’s also statistical data on how long patients live with various types of cancer for example.
Looking at this chart you see the huge variation seen in the 5 year survival rate for different
cancers. From the time Lung cancers are diagnosed vs Breast cancers there are years of
difference.

Palliative Performance Scale

 - Looks at 5 major categories
o Ambulation
o Extent of disease Process
o Patient’s ability to Self Care
o The patient’s intake
o Level of Consciousness
- Generally, patients below 70% should begin thinking about palliative care
- Below 50% patients can qualify for Hospice Care

The patient's functional status has deteriorated rapidly. During chemotherapy, she developed
esophagitis and recurrent neutropenic fever. Now, abdominal studies demonstrate early obstruction. Her
primary care physician asks herself, “At this stage, what is my role in her care?”

The PCP’s role does not end at providing the diagnosis and referring the patient out.

You can divide that PCP’s role in 3 stages based on the progression of the disease

Early stage:

- Communicate their prognosis and focus primarily on medical treatment

- Encourage questions by the patient and address any concerns they may have
- F/u with specialist recommendations and help patients understand their progress

Middle stages

- Continue updating the patient on their prognosis

- Relay any changes to the disease process
- Start to REFOCUS pt’s EXPECTATIONs from curing the disease to managing symptoms

**The use of language Is very important at this stage. For example, saying “Its time to think about
withdrawl of care” Is not recommended. It might make the patient think their doctor doesn’t want to
care for them anymore.

Instead saying, “Do you think that it is time to consider a different type of treatment that focuses on
your symptoms? I’ll be here with you no matter what you decide.” This allows for the conversation to
shift without making it seem like there is a Cessation of Care.

In the middle stages,

- There should be an increased focus on palliative needs

- Encourage advanced directives to be set in place
- Start the discussion of Hospice Care

Late stages

- Assess patient’s understanding of disease course

- Discuss advantages and disadvantages of experimental treatments
- Focus on explicitly palliative care and improving the patients quality of life
 - Continue providing emotional support and address any concerns the patient or their family may
have.

Advanced directives

There are two types of advanced directives, Instructive and via Proxy

Instructive advanced directives can be in many forms

- Living will, DNR order, Personal letters, Verbal statements and organ donor cards

Proxy – advanced directives include

- Health care proxy in the event the patient cannot make decisions for themselves. This person
only makes healthcare decisions and not financial decisions. The power of attorney ultimately
also has a say due to the fact they control financial means.
- Common law directive: Spouse/Domestic Partner | Child over 18 y/o| Parent | Siblings | a close
friend

Molst form

The first part of the form talks about who its for

- Patients who want changes in life sustaining treatment

- Residents of a long term care facility or requiring long term care services
- May die in the next year

Section A – CPR or DNR order

Any advanced directives in the place: health care proxy, living will etc

Then the form goes into Treatment guidelines

- Comfort measures vs Limited intervention to full intervention

- DNI, Long term intubation or Trial period/ NIV if appropriate

What to do about future hospitalizations: send to the hospital vs only in severe circumstances

Then there is a section on Fluids and Nutrition

- Does the patient want a feeding tube in the event it is required, maybe a trial period or long
term feeding tube
- Similarly with IV fluids, no fluids vs a trial period

Lastly there is also mention of antibiotic use

- Follows the same principals: do not use abx to limited use only when infection occurs and use
abx as medically indicated

1. Pain management: Opioids , Faces Pain Scale

 2. Nausea & Vomiting: correction of metabolic abnormalities aggressive bowel care, opioid
rotation.

a. Cancer patients with inoperable malignant bowel obstruction: dexamethasone,

haloperidol along with drugs that decrease gut motility can be used

3. Constipation: stopping nonessential constipating medications and pharmacological

interventions (laxatives, stimulants & surfactants)

4. Dysphagia: swallow evaluation, modification of oral intake, PEG tubes (dysphagia that is
expected to improve), regular Oral Care

5. Depression: regular screening and initiating therapy when suspected

6. Delirium: attempt to reverse precipitating factors, offer supportive treatment. Use of

psychotropic drugs for persistent symptoms

Christakis NA, Lamont EB. Extent and determinants of error in doctor's prognoses in terminally ill
patients: prospective cohort study. BMJ. 2000;320:469–473.